CHAPTER 5 THE FIRST BIG SETBACK

Our life, which the year before had settled down, was completely unsettled. We had no permanent home, a few days to find a school for all four kids, no permanent mailing address, and very few frends around. Worse, we were subject to monthly reviews by the insurance company to let us know if we could continue in therapy - after I stood up they decided to pay for therapy every day. It seemed like we had to make a terrible decision every week. The first thing I did was to email the hospital in San Jose to see if this development would give them a better attitude. I asked for therapy every day because it obviously made a big difference. They said, 'Good to hear from you, glad things are improving, we will resume therapy two days a week." It made no sense - I had heard them complaining about revenue shortfalls, and yet they did not want me. I knew it was not the insurance company, because by now we had gotten to know them and they were both sympathetic and helpful. It would have been much better if they had just told me the usual out comes and their probabilities, instead of treating me like that. Then we could have made some informed decisions about our lives. Instead, we got the impression that those people in San Jose did not know what they were doing, like when they tried to tell Jane I would never move. Well, at least that made our decision to stay in Montana easy.

One of the first things we had to do was get a more permanent roof over our heads. To stay at Terry's meant sending Steven to 'Flathead High', not exactly what he needed. It was like a bad dream. We read in the paper that Bigfork schools were good, so we looked for a home there. The first thing we did was stuff a few hundred mailboxes with a flyer with our story, thinking someone who left for the winter would rent their house to us. We got a call from someone who set up a prayer group for the 'flyer family,' and from a real estate agent trying to sell something, but no tangible help. Meanwhile we started trying to find a rental home. The first agent showed us a place with five steps, but the second agent was a little smarter. She showed us a place with tiled floors, no step, a Lake view and a month - to - month lease. We rented it on the spot, just in time to register the kids for school. For the boys that was a shock -Steven had gotten a scholarship into the college preparatory school of his dreams, and Nick was about to start Eighth grade with his friends. They were aghast when we told them we had to move. We solaced ourselves with the knowledge that Steven could get back in the school at Christmas, and Nick's best friend said Nick could live with them if we stayed past December. The bad news was that we couldn't move into the new house until after school started.

It was about this time that we got the idea for our cookbook. I was complaining so much about institutional food that my speech therapist suggested she, Jerry and I all write a cookbook together. We all agreed, and I started outlining it. We also discovered a simple thing that really changed our lives. At night my legs would spasm and pull up, which was very uncomfortable. I, of course, could neither prevent nor rectify it. It would wake me up several times a night, and I had to wake Jane to straighten me out. For several months, we never got a full night's sleep, and it was showing. Then we came up with a plan. We tied a bedsheet from one rail to the other, just above my knees. Now when my legs spasmed, the sheet kept them from pulling up and waking us. Jane finally could get a full night's sleep. We still use that idea, with some modifications, to this day.

Before we even got a chance to move into the new rental house, THE BIG SETBACK happened. As Jane was getting me up one day, I felt faint and laid back in Terry's guest bedroom. I kept feeling faint, so Jane called my brother. He listened to her, then told her he wanted to see me in his office. Jane said I couldn't sit up so he suggested she have the ambulance take me to the ER. The paramedics arrived and hauled me out on a gurney. They did their normal tests and discovered my heart rate was 250 [normal is about 80]. I told Jane I loved her and prepared for the worst, even though I felt okay. My brother freaked out when he saw my heartrate, which was discomforting. The cardiologist gave me medicine to slow down my heart and said I had atrial flutter and needed surgery. Great-like we didn't have enough going on!

They drugged me up and made an appointment with a cardiologist in Missoula, about an hour South. The drugs knocked me out so that I could only sit up a few minutes. This is where having a private 'ambulance' was so handy. To go anywhere they would get me in the wheelchair, quickly roll it into the van, and lay me on the bed in there. It was a lot of work to go anywhere. We were lucky Elaine came along when she did, because the kids were in school. Then we got the news, good and bad. The good news was the guy in Missoula could fix my heart; the bad news was they had to keep me drugged up for two months until the blood thinner worked since the surgery could loosen blood clots. This was bad news because it meant I had to lay in bed for two long months before therapy could resume, virtually assuring that I was not going home at Christmas. To make the best of it and to preserve my sanity, we focused our energies on the cookbook. After our part was done I wrote Jerry a very nice note asking him to do his part. Instead of writing he had been sitting alone in his room watching football. The note freaked him out and he withdrew from the book. The speech therapist didn't do anything, either, so friends and family finished it. I wanted to have it done before I had to focus on therapy again. Meanwhile, all that laying around gave me pneumonia on top of everything else. Finally I had the surgery. The doctor said he got 'most' of the problem; then my heart swelled up and he had to stop. Either that or he didn't want to be late for dinner. In any event I got off of the heart medicine and resumed therapy.

I did get one nice break during this time. My birthday is on October tenth, and everyone came to our house for a birthday party. Jerry and Elaine used to run restaurants, so they knew how to handle large crowds and entertain everyone. I was confined to bed, so they just brought the party to me, and we had a blast. We had been planning it around a Notre Dame football game, but decided we didn't want to dampen everyone's spirit's (except Alicia, my physical therapist, who went to USC), so we passed on that.

After surgery, I was still weak. One of the most difficult things was sitting on the commode chair and going to the bathroom, because the suppository made all my muscles stiffen. It was so painful, I was convinced it would kill me in a few years.
One night it almost caused me to pass out - my blood pressure, normally 110, was 38. Jane called Elaine, but she didn't come down, so Jane managed to get me back in bed with the kids' help. Elaine later explained (in much more detail than we cared to hear) that she couldn't come down because of what she was doing with Jerry. All we knew was that we almost had a medical emergency.

It seemed like life those days was filled with horrible decisions. One of them presented itself when it became obvious we wouldn't be able to wrap up therapy by Christmas, and it had to do with Nick. He had been going to finish eighth grade with the kids he went to kindergarten with. We now faced the question of whether to try to send him back for his last six months. Doing so would greatly enhance his chances of getting into the high school of his choice in the Bay Area. The family that had agreed to take him, however, changed their mind, so we would have to make other arrangements. I was pretty adamant about it, and Jane finally gave in. Some other friends of ours agreed to take him, and we decided to send him back.


About this time Jerry and Elaine decided to leave, even though they had committed to staying for a year. We couldn't tell if it was because we went ahead on the cookbook without Jerry, or, if it was, as they said, because of the children. The children were a bit rambunctious for Elaine (who had never had boys), and refused to eat some of Jerry's vegetarian meals. It didn't really matter; it was probably time for them to leave anyway. They had come along at a great time and had been kind enough to help us, but we were clearly getting on each other's nerves. So we welcomed in the New Year knowing that we didn't have a caregiver, and only had one son left who was big enough to help Jane transfer me...